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It's Tricky by Thora Allen

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Published on Friday, 30 June 2023 00:00

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The 2023 chapter of Fibromyalgia has been very different from anything I have experienced since my diagnosis 12 years ago. My health has been exceptional. I’ve gone from screaming into my pillow at night, in tears from the relentless pain, wishing that I was no longer here, to feeling pretty amazing considering the strain my body is under. I wish I could put my finger on why I am feeling this way. To be able to make my way back here when this “well spell” comes crashing down is the dream. I live with the constant fear that tomorrow is the day when it will all end. It’s very important though that I don’t let the fear of it all ending, stop me from grabbing this period of good health with both hands. It’s absolutely necessary for me to make hay while the sun shines.

March 2023

Feeling fatigued after the busy few days I’ve had. I haven’t slept well all week either. No sleep at all last night, Thursday or Friday night. I am doing remarkably well considering.

I don’t sleep well at the best of times. I think that is the reason I am unable to sleep at the moment. This is because part of me is excited to see what tasks I will bring myself to attempt the next day, and how much energy I will have to complete them. The other part of me is slightly concerned that tomorrow is going to be the day everything comes crashing down and I end up back to the bedridden zombie that never leaves the house unless she has to go to work.

I don’t want this spell of good health to end. It’s tricky when you have so many good days in a row. You want to enjoy it as much as you can while you have it, but at the same time mentally prepare yourself for when the bad days return.

It is crucial to limit overexertion and not do too much. It’s almost impossible to find the perfect balance, even with more than a decade’s experience under my belt. Insomnia & symptoms from my multiple health conditions make it even more complicated.

Moderation is the key. If a person with fibromyalgia does too much on days when their symptoms are good, they may end up having more bad days. However, on bad days, individuals should still try to be as active as they can. Keeping activity levels as even as possible provides the best outcome.

Still, I managed out for some fresh air this morning.

June 2023

The “well spell” of 2023 is still going strong. There have been many bumps in the road along the way. And many times I felt like this “well spell” was slipping through my fingers like grains of sand. Feeling powerless to stop it all from coming crashing down.

I’ve learned my mood plays a massive part in how I cope with my pain and I shouldn’t underestimate the power of the mind. This might sound strange but I don’t allow myself to be angry or bitter about my situation. I just feel being that way isn’t productive and it does you and those around you no good in the long run. How do I control myself this way? I can’t say for sure. I feel fortunate to have been born with a strong mind. I am extremely stubborn which I am told by my doctor is both my best and worst quality. I can control my thoughts and feelings which isn’t necessarily good for you in certain situations but for me it serves me well when I need it. The tricky part was learning not to control the parts which only end up hurting you in the end. When it comes to my low mood it’s much more complex. I can’t just pull myself out of it and I am sure that will be the same for most of you.

It’s a vicious cycle. Pain controls mood, mood controls pain. I don’t which one made me feel better. Did my pain improve then my mood improve? Or is it the other way around? Improved mood, improved pain?

One thing that has changed is that I have begun to put myself first more often. Instead of completely ignoring my needs to put the needs of others first. I have saught opportunities that bring me joy. Found joy in the simplest of ways. I have taught myself to have a different perspective on things. If there is something I want to do that will bring me joy but my health won’t allow it. I simply find a way to enjoy it in a different form. A good example of this is my burning desire to sail around the world as crew on a tall ship. Sadly for me my health will not allow this. I am simply not fit enough to pass the certificates I need let alone work as crew. So instead I am going to Shetland next month for Tall Ships Lerwick 2023. I will be volunteering whilst I am there, as a Deck Hire Liaison Officer. I couldn’t be more excited about this opportunity. It’s not exactly sailing around the world but it’s pretty darn close. I will take it!